Another Post

General forum for the UK Keratoconus and self-help group members.

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

kieran19685
Regular contributor
Regular contributor
Posts: 146
Joined: Mon 03 Sep 2012 11:50 am
Vision: Contact lenses

Another Post

Postby kieran19685 » Thu 29 Jul 2021 11:44 am

Sorry for having another post but how do people deal with KC and other eye problems? i thought KC was bad but found out i had a TIA (Mini Stroke) in my good eye and now have (i think) a permanent black spot in my vision - its really annoying

Green
Chatterbox
Chatterbox
Posts: 279
Joined: Wed 18 Apr 2018 1:29 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Another Post

Postby Green » Thu 29 Jul 2021 1:35 pm

Kieran so sorry you've had a TIA, the black spot must be really annoying, have you asked your ophthalmologist directly about this, whether this is temporary?

I struggle a lot with my KC with anxiety especially when there are problems and all out panic if it's the 'good' eye.
I talk with people I trust who understand that I'm not someone to do 'glass 1/2 full' with, that (for me) the best response is to acknowledge the scale of my distress without geeing up, dismissal, judgement or comparison to others.
To let me look at worst case scenario's, because in order to cope I find I need to look at the worst first.
We're all different in how we cope, there's no correct way, and sometimes we need to tell others how to be supportive.
So sometimes I spiral, then I reach a point of shelving it, so the best others can do is to hold hands in the dark with me when I'm spiralling.

The RNIB do offer short term counselling, a fixed number of sessions, that can be useful.
Some eye hospitals have nurse counsellors. I found at my hospital they wouldn't see anyone with previous mental health issues though.

kieran19685
Regular contributor
Regular contributor
Posts: 146
Joined: Mon 03 Sep 2012 11:50 am
Vision: Contact lenses

Re: Another Post

Postby kieran19685 » Thu 29 Jul 2021 1:49 pm

thanks for the reply - its cause a black spec with like see through cobwebs - the eye clinic didnt say it was permanent but dont go back for another week to see them. The TIA clinic doctor said its more than likely permanent - its not affecting my vision just really annoying and constantly seeing it and thinking about it

Green
Chatterbox
Chatterbox
Posts: 279
Joined: Wed 18 Apr 2018 1:29 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Another Post

Postby Green » Thu 29 Jul 2021 5:04 pm

I'm sorry it's permanent, I would find it annoying too, I wonder if it would help to meet with someone else who has this too

User avatar
gsward
Chatterbox
Chatterbox
Posts: 203
Joined: Thu 24 Jul 2008 7:30 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Another Post

Postby gsward » Thu 29 Jul 2021 7:45 pm

Kieran, I too think the RNIB might be a good option for you https://www.rnib.org.uk/services-we-offer-advice-and-support-services/sight-loss-counselling-team.

Graham

kieran1985
Newbie
Newbie
Posts: 9
Joined: Mon 12 Jul 2021 12:46 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Another Post

Postby kieran1985 » Fri 30 Jul 2021 7:15 am

Thank you

User avatar
space_cadet
Champion
Champion
Posts: 955
Joined: Tue 12 May 2009 11:46 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Leeds
Contact:

Re: Another Post

Postby space_cadet » Fri 30 Jul 2021 6:59 pm

I used that service from RNIB when I had my sighted registered as Severely Sight Impaired / Blind. It was of huge benefit.
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

kieran19685
Regular contributor
Regular contributor
Posts: 146
Joined: Mon 03 Sep 2012 11:50 am
Vision: Contact lenses

Re: Another Post

Postby kieran19685 » Thu 05 Aug 2021 6:16 pm

after all had some good news that the NHS jumped the gun and have misdiagnosed me - i didnt have any TIA or Stroke. I had a small blockage which the eye hospital believe is getting better and will go in the next month hopefully - so happy thanks for all your posts

RedOnion
Regular contributor
Regular contributor
Posts: 97
Joined: Thu 17 Aug 2017 8:05 am
Keratoconus: Yes, I have KC
Vision: Other

Re: Another Post

Postby RedOnion » Thu 05 Aug 2021 7:34 pm

That’s great news Kieran! Fingers crossed it all goes well :)

User avatar
gsward
Chatterbox
Chatterbox
Posts: 203
Joined: Thu 24 Jul 2008 7:30 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Another Post

Postby gsward » Thu 05 Aug 2021 8:03 pm

kieran19685 wrote:after all had some good news that the NHS jumped the gun and have misdiagnosed me - i didn't have any TIA or Stroke. I had a small blockage which the eye hospital believe is getting better and will go in the next month hopefully - so happy thanks for all your posts


Really pleased for you. Give it a bit of time and the vision can be re-assessed too.


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 6 guests